Knowing Autism by Lorca Damon; eBook Edition 2012

< My Thoughts > From cover to cover Lorca’s book is full of questions and answers to sensitive issues which you may not find in other places.

Excerpt from the Introduction by Lorca Damon –

1% The idea for this (second) book came about because every time I mention my autistic daughter to someone, the response is the same: “Oh, I know someone with autism.”

I wrote my first book about autism, Autism By Hand, because I couldn’t find any practical day-to-day information on raising my autistic daughter Carrie. I read everything I could get my hands on, but all of it was theoretical or scientific; even worse were a few books written by parents who swung widely to both ends of the emotional spectrum.

Some were nothing more than pie in-the-sky manifestos on how I should wear my daughter’s diagnosis and wear it like a badge of honor, as if I was one of the lucky ones who was chosen to have autism creep into my family and try to steal my daughter away.

2% I wrote about all the little things we learned that made a difference in helping my daughter become a stronger and more confident person, in spite of what autism was trying to do to her.

3% Overall, the theme of that book was about telling my daughter, “I love you fiercely, but you are going to have to learn to live in the same world as I do.”

4% I needed an instruction book where someone told me “Lorca, you have to get off your butt and help your baby, and this is how you are going to do it.”

End of excerpt from the Introduction by Lorca Damon.

Excerpts from the book –

5% (Chapter one: What Is Autism?) The long answer to the short question is autism might be lots of things. The only true answer is that autism is different in all children.

Here are some of the things we do know about autism. It is a disconnect in the brain that mostly affects language and social interactions, so verbal skills and having relationships with the people they come in contact with can be difficult.

Many autistic kids develop coping behaviors – or fixations – that they fall back on in stressful situations…

Unfortunately, those behaviors are so freaking weird that the kids get stared at or laughed at, which they are completely aware of but are unable to put a stop to.

I want everyone to understand that when an autistic person is stared at or talked about, he very well may be fully cognizant of the fact that he is the object of ridicule.

6% At the top of the common issues pyramid is sensory information. Sensory information can get skewed when autistic kids receive it, so background noise that we would never notice, like an airplane flying overhead or the neighbor mowing his lawn two houses down, can literally cause painful sensations, as can textures of clothing or certain food tastes. The sour piece of candy that made your face pucker a little bit can be painful to an autistic child.

I know this is hard for you and me to comprehend, but we are “talking serious physical pain here.” Not a mild irritation that one can live with, but serious physical pain from wearing a shirt with a scratchy tag or from hearing the sound the refrigerator makes, even though the kid is in the living room. Keep that in mind: physical pain like you and I cannot even envision, not “minor irritation that he can just learn to live with.”

9% Sensory input is often skewed in some way so that clothing doesn’t feel right or foods don’t taste right. Hugs don’t feel good and music that other people think can be fun or interesting or soothing can instead be frightening.

10% My daughter Carrie actually has an additional diagnosis of juvenile bipolar disorder on top of her autism. We thought for a long time that her wild mood swings and frequent screaming meltdowns were just another symptom of autism that we would have to learn to accept.

…(When) we began medication for the symptoms. She improved almost immediately and I could still cry thinking back to the years she spent suffering with uncontrollable emotional roller coaster rides because…we could have done something about it much sooner if we had been more aware of what is autism and what isn’t.

< My Thoughts > “What is autism and what isn’t.”

Many times, those with autism have two or more chronic conditions they are dealing with. My son went for years with an undiagnosed rare seizure disorder. This wasn’t a result of his autism, but is often seen as an accompanying problem. So when in doubt, visit a neurologist. But, get a referral from your primary physician to follow insurance protocol and prevent a huge co-pay. Smiles.

11% It’s not an isolated world. While a lot of kids tend to withdraw or spend hours inside their repetitive behaviors, you can’t use this as an excuse to think the child doesn’t know what’s going on around him.

We made this mistake many times in the early days of Carrie’s diagnosis… We would talk about Carrie like she wasn’t even there or I used to explain her weird behaviors to gawking strangers by telling them, “She’s autistic, she’ll calm down in a minute.”

I should have been saying, “Can I help you with something?” and giving them the evil eye. She’s my kid, and trust me, she’s no more badly behaved than any other kid trapped in a grocery cart!

On the other hand, it’s also not an excuse to raise a feral child. It is not an excuse to let a child live without dignity by not requiring a certain level of behavior or by allowing him to embarrass himself…

Autistic or not, they are still children and they are capable of some level of behavior.

12% There cannot be an excuse to NOT plan for a future. I personally do not believe there is a pill or a protocol or a diet that will make Carrie wake up tomorrow being “normal,” but I also can’t write her off as a child who will never become anything and say she won’t have a full life ahead of her.

13% …I certainly don’t waste a lot of time trying to make her become normal. …I do spend a lot of time trying to prepare her to live in the real world when she is older...

I want her to grow up to have a job that she enjoys, not some menial task in a sheltered workshop that wastes her really sharp mind.

I want her to be as independent as she can be, because it means the transition to the group home she will probably live in will be a lot less painful for both of us. I want her to be able to form relationships…

But she can’t do any of those things if I don’t make her adapt to a world that is very different from the one she would like to retreat to inside her head.

Now that autism is here, and is here to stay, there is no point in wasting Carrie’s life by pretending that it is a good thing or that it is where she has to stay for the rest of her life.

14% I work with her very diligently BUT LOVINGLY to bring her out of her isolated world, one baby step at a time. This book is about helping autistic people, not enabling.

15% Carrie isn’t dying from a terminal illness, she’s just a very different person than I originally thought she was going to be.

16% I’m a college educated teacher with a Master’s degree and even I had to ask her neurologist one day to give me an adjective to describe her. “Is she ‘mildly’ autistic? You know, ‘the probably going to college’ kind?” I asked tentatively. It took him a while to answer.

“No. She’s not mild. She’s more like ‘moderate to profound.’ She will probably never go to college and she will probably never live on her own,” he answered.

(NOTE: I’m crying just writing those words because I remember how much they hurt…)

I had to have that bucket of ice water thrown in my face so that I didn’t waste precious years of Carrie’s life while operating on the assumption that Carrie was going to turn out just fine on her own.

22% Hear me now: you are NOT a bad person if you are uncomfortable being around the (autistic) child, especially if you are going to be alone with the child for any amount of time...

…There are many, many reasons why you might be uncomfortable…

Is the child verbal and can make you understand his needs? Is he easily upset by things, and therefore you could accidentally cause a horrible meltdown because you didn’t know better?

Is he going to be violent or aggressive towards your children if you get together to play or take a trip? These are very serious considerations…

< My Thoughts > “…many reasons why you might be uncomfortable…”

The following was retrieved from: http://www.specialneeds.com/children-and-parents/autism/autism-different-way-being –Author Elaine Hall tells us that her son Neal’s teacher was heard to say… “I don’t want a boy like that in my class.” She goes on to say that this lack of understanding is sad for so many reasons. When my son, Neal, stopped to look at the hubcap of a car parked along the street, I stopped to look too. Kneeling down, what I see is the most beautiful thing; the sun falling on a hubcap creates a kaleidoscope of brilliant, shining shards of light. It is magical. That day I grew in compassion and understanding.

We “so-called typical folks” can learn from those who perceive the world differently. Nonverbal autistics, who when taught to type, write extraordinary prose. We applaud their special talents. She says in reference to “It takes a village…”, that “It takes a child with autism or other special needs to raise the consciousness of a village.”

22% …when faced with my daughter…

Do you know about Carrie’s diet and which foods are forbidden on the GFCF diet for autism?

Do you know how she indicates she has to use the bathroom? Do you know if she can even use the bathroom by herself?

23% If you don’t feel comfortable around an autistic child, you have two choices: educate yourself so you can get comfortable, or avoid being left alone with that child.

45% All of the school staff who would work with Carrie – her classroom teacher, her special ed teacher, her speech pathologist, her paraprofessionals, even the school nurse – attended a workshop on autism over the summer before Carrie started school, just to be prepared. THAT is awesome.

…no matter how well versed you are in autism or how many professional development courses you may have taken, you don’t know THIS child.

46% You don’t know MY child. You don’t speak her language. You don’t know what makes her afraid or how to soothe her when she gets overwhelmed by your world.

You don’t know how to help her make friends or how to help her have a great day.

Can she use the bathroom? Do you know if she can even use the bathroom by herself?

I can tell you about her favorite activities, how to know when she’s about to lose control of herself, and more.

Get the child’s safety needs established first.

Does the child elope (run away)? How does he indicate he needs to go to the bathroom? Does he form friendships well? Does he work well with other kids? How does he let you know that he’s stressed out? What triggers are there that cause him to have a meltdown? The list goes on and on.

What assistance does she need? Is she a runner? What do you do when she tries to elope? I’m Carrie’s mother and I barely have these things under control. But, I do know the activities she likes to do and what triggers her to lose control.

< My Thoughts >“You don’t know MY child.”

General education teachers can determine pretty quickly which children are confident and which are struggling. Special education teachers may take months to determine ‘what’s what’ with your child, but they are looking through a professional’s lens. Because after all, this is not a typical setting with anticipated set of actions and reactions, it’s school, with other children on the spectrum with whom they are interacting.

Also, the world a child with autism lives in is ever changing. My son loses skills with each major seizure event. Some skills he can begin relearning, but many he cannot. Sometimes he has to go back into diapers for several months. The only constant is the autism. Other things take time and patience. It can take up to a year to teach a skill that can be learned well enough to be relied upon. We often hear, “Wow…he can do that!” “Yeah…it only took 15 months to teach him.” Smile.

Your child will have good days and not-so-good days…as will you and your child’s teacher. There are days of medication ‘override’, when what dosage worked yesterday is not holding as well today.

Interventions that worked well yesterday are brand new and like starting over today. Often times because of subtle changes that only the child notices, like –

The teacher’s hair smells different because she tried a new shampoo. The air outside is thick and humid and changes the mood all around. Yes, ‘air’ does bother him/her. The classroom aide was late today and seems rushed or upset. Its assembly schedule today. The lunch lady is new and doesn’t know the kids. The district calls for ‘fire alarm drill’ just before the end of day. The water fountain doesn’t work. The bathroom is closed for repairs and students need to use the one on the other side of the building.

Can it be that any one or all of these subtle things can bother your child? Yes!!! Can they identify which ones, or prevent the terrible distraction or meltdown? No!!! Plus, you will probably get a note home from the teacher saying… “Jack wasn’t really trying today. Did something happen at home?” Seriously?????

53% … Carrie cannot process the word NO. Here’s why. NO means a permanent condition, something that will never take place. It took us YEARS to figure this out.

< My Thoughts > “… Carrie cannot process the word NO.”

Many children with autism have not achieved the developmental milestone of ‘object permanence.’ In other words, if something or someone is removed from the visual field…it is gone forever. The child does not look for it in another place or peek around the corner…because ‘it’ is gone, NEVER to return, in their present perception.

Think about achieving ‘object permanence’ as meaning that the child knows mom is just out of sight for a moment, in the other room. She will reappear with a fresh bottle of milk or a cookie. He/she knows this. But when a child with autism loses a toy or puzzle piece they may tantrum because they are NOT secure in the knowledge that the loss is a temporary situation. Neither do they remember that last time similar things turned out okay.

Following this line of thinking to the child hearing “NO, it is not time for a snack”…or your favorite cartoon. They are hearing…you will never see a ‘snack’ or your favorite cartoon again…ever!

And because they seldom ‘store’ experiences, they never seem to fully understand that we mean …“NO, not right now”… “maybe later when mom isn’t so busy”…or, “soon as your dad gets home.”

53% NO means the thing she requested is NEVER GOING TO HAPPEN. I wish I could have back all of the years of her early childhood that were spent wiping her tears and snot and prying her sobbing body off the floor, all because I didn’t know this about her. It’s also true for a lot of other autistic children.

This strategy works with everything we do involving Carrie. “I want my snack,” is answered with, “Yes, you can have your snack in thirty minutes.” (…or after whatever I want her to do).

How much more pleasant was that exchange than one involving me telling a child, “NO, it’s not time for snack,” and the resulting tantrum?

But here’s the cool part, EVERYBODY would love to hear a positive response instead of a negative one!

Some of the reasons to consider a softer response or to change the parental perspective. According to Sokhadze, et al. may affect memory processing your child may be having the following understanding difficulties:

Hasn’t had that experience before, or doesn’t recognize it, or doesn’t remember it.

Think about your own experiences, even with a great memory, which do you remember first… the good times or the bad times? Just saying. Smiles.

54% One thing I’ve noticed with the strategies that help Carrie succeed in school is that these same strategies can help lots of students. Carrie needs frequent breaks and one-on-one support to learn new skills; she needs visual aids to help her understand math concepts, but most of all she needs a teacher who understands that her emotions don’t work like everyone else’s.

57% When my daughter goes to my in-laws’ house, she has to have French fries from and she has to watch the movie Chicken Run on their bed. It’s their thing. Carrie will not even tolerate that movie at our house, because it’s what she does at her grandparents’ house.

< My Thoughts > “Carrie will not even tolerate that movie at our house…”

This is a tough one for parents. “But you LOVE the movie Chicken Run!” But in your child’s world s/he is saying… “NO, it doesn’t belong on my TV… it ONLY belongs on my grandparents’ TV!!!” It’s in the WRONG place! The same way that a toy or an object showing up on the wrong shelf, or in the wrong room in the house, will surely bring on a tantrum. “Why aren’t you HAPPY?” “You found your toy!” NO I found my toy in the WRONG place and that threw my whole world out of whack!!!

60% Carrie is on a strict gluten and casine free diet (GFCF). It is absolutely not a cure for autism, but we saw enough improvement in her wellbeing to make it worthwhile. NOTE: See Autism by Hand (62%) (for more information on Carrie’s GFCF diet.)

85% One of the things I wish for Carrie is that she had more friends.

Carrie cannot tolerate seeing people in public that she already knows from somewhere else. We absolutely cannot go to Walmart, because we ALWAYS bump into someone we know.

When I say Carrie can’t stand seeing people she knows, (where they don’t belong) I mean, she grabs her ears, closes her eyes, and screams!

86% The people she knows are not where they belong. It’s disorienting and upsetting to see people in the wrong context, even if they are family members or very close friends.

98% We still have so much to learn about autism, but the great thing is we are learning those important things at an incredible rate. There has never been a better time to be an autistic person because of the more widespread knowledge and recognition, even from average people on the street, but especially from the people who matter most in the person’s life.

99% Even if you didn’t learn all you needed to from this book, you took a step in the right direction by even feeling like you should read it and now, when that mother has to let her child loose into the world, there will be people like you around him on a daily basis to help him be as successful as he can be.

< My Thoughts > “help him be as successful as he can be.”

Hopefully you will fill your child’s life with people who will know them and help them to feel successful, when you turn them loose into the world.